Health Organization for Pudendal Education

Hello,

I'm a 33 year old male whose been dealing with pelvic pain for nearly 2 years. It started suddenly on 4/14/2013 first with my testicles and within a few months had expanded to include multiple areas in the pelvis. At this time I have moving pain in my upper hip, lower abdomen, testicles, perineum, buttocks, and lower back. Since it's started I've received multiple diagnosis from chronic epdidymitis to chronic pelvic pain syndrome with the current diagnosis being pudendal neuralgia. I've tried multiple medications and have tried physical therapy and sacral injections. I have a running thread on the Prostatitis forum by the same name which details my journey over the last two years.

At this time I'm getting ready to try Cymbalta on top of Lyrica to see if I can get further relief while looking into seeing Dellon who my Neurologist is looking into. I'm hoping one day to get out of this pain, but not sure the direction and very scared of choosing the wrong approach only to end up worse off. I'll be posting to this thread to detail further my journey would appreciate feedback. It would be nice to get back on with a normal life.

Evilpog,

Welcome to the forum. I am sorry you are experiencing so much pain. Please take the time to search Dr. Dellon on this forum so you can read the reviews of members who have had experience with him so you can decide if and how to proceed. From what I have read, many have had negative outcomes from his surgeries and treatment, so that may be something to consider.

My best to you,
Stephanies

Thank you for the words of caution. I'm doing my best and trying to be diligent in my research, but there is so much conflicting opinions. I'm also running out of options and don't have access to a multi-disciplinary team to help ensure the diagnosis.

Hey Evilpog,

It can be a real maze trying to figure out a diagnosis. Typically with pudendal neuralgia there is more than just one thing going on and the trick is to find the underlying cause. For instance someone could have irritation of the pudendal nerve but at the same time have SI joint dysfunction, a femoral acetabular labral hip tear, or other musculoskeletal problems. What type of physical therapy did you have?

Violet

Thank you Violet,

I've tried physical therapy for pelvic muscle dysfunction and myofascial release along with chiropractic. The therapist was good and I was glad for her support considering few pelvic therapist will treat men. I didn't feel it helped much, though can't say that with certainty. I've also tried Wise/Anderson protocol minus the paradoxical relaxation part.

One thing that makes it difficult to determine if pudendal neuralgia (PN) is the original cause of PN-type pain and the primary generator of pelvic pain is that the pain associated with PN can cause the pelvic muscles to go into spasm and cause symptoms throughout the pelvis. At least that is what happened to me. History and clinical exam can help determine the diagnosis. Do you have any idea what might have precipitated this for you? Did your PT detect any pain along the course of the pudendal nerve when pressed on via the rectum?

Violet

My PT at the time did check the nerve, but it wasn't sensitive compared to the rest of the pain I was feeling. She did think the pelvic floor muscle were tight and used a probe to measure the tension of my anus which was something like 6 or 7 when she said 2 to 3 was normal. Still the physical therapy and massages didn't seem to help much.

Cymbalta doesn't appear to be helping so thinking about my next steps. I'm currently taking 300mg of Lyrica twice a day; Wonder if I can increase that. Reading through the forums and some published papers I figure I'll ask to try Valium next and see about either getting a pudendal nerve block or 3T MRI (No clue where or how.).

Higher doses of lyrica aren't recommended. http://www.rxlist.com/lyrica-drug/indic ... dosage.htm

There was a guy named Rick on this forum who was taking more. You can check out his post. http://www.pudendalhope.info/forum/view ... ica#p42405

Violet

Been a while since I last posted. I'm still dealing with my pain with not much luck getting it under control. Lyrica and Cymbalta didn't seem to work which doesn't justify they price continuing them. I'm trying gabapentin again, but doesn't appear it's help. They only them that helps partly in carbamazepine XR, but still doesn't control the pain throughout the day. I'm looking into trying a pudendal nerve block, but not sure where to go to get one performed. I live in Northwest Arkansas and my Neurologist doesn't know anybody in the area that performs pudendal blocks on men. Any recommendations?